daisy

For me, the saving grace of exercising has been a stationary recumbant bike. It allows me to built up my quads (supposedly the stronger the quads the easier it compresses the blood upward) and get some activity. The chair has a back and arms so if I do get dizzy I won't fall right off and hurt myself like on a "regular" stationary bike and the resistance can be adjusted. Another option is the bicycling pedal exerciser. It's just the pedals basically and you can sit and watch TV and pedal and strengthen your legs or you can pedal with your arms. I also like to walk on days when I feel stronger.

Hello - I really feel for you because those episodes certainly are difficult...and I can relate to the domino effect with the fast heartrate and then the anxiety. I don't know what your a.m. routine is but I found I can't jump out of bed at all. I have to take my time, start drinking water or something salty and move slowly. I used to bounce out of bed and get moving but that just can't happen anymore. Our bodies are coming off of a long night of not drinking so maybe a little hydration can help? Just a thought.... Also, you said the beta blocker isn't working as well. That did happen to me. I found I built up a tolerance to it over time. It may be time to tweak your dose a bit if possible...maybe bring this up to your Dr. Feel better!

Thank you for the replies - Mighty Mouse - good luck with your test next week....I hope you get answers. For those of you who had an attack and/or nausea on the table with the CCK - did it last long? As long as a "regular" attack? My attacks can last a couple of hours and I'm just wondering if whatever happens on the table subsides quickly? (Can you tell I'm nervous?) I just know what happens to me pots-wise when I'm in pain or stressed - so it does concern me. Thanks!

Well, I saw the GI Dr. yesterday. He strongly suspects gall bladder but now I have to go and have the hida with CCK done (no big surprise there based on all of your responses). My other Dr. didn't order it. Whoopee for me! It is scheduled for next Wed. I have never in my life seen something drag out like this has.....there has to be a better way. So, in the meantime, I am still eating very little, having attacks here and there (but trying very hard to avoid them!) and lots of nausea. Now, I am having horrible lower stomach pains but that could be from stress...I don't know that the gall bladder would cause that. Anyway, that's the update. So, another week until the test and then wait for surgeon consult and then wait surgery. This better be taken care of by Thanksgiving!!! I want to eat turkey and all the trimmings!!!

Julie - Your situation sounds very similar to mine. I've been having these "attacks" for several years. I have been to the ER for them a few times and also to my Drs. office. Each time, they did an ultrasound and didn't see stones so they said it wasn't gall bladder. I will also sometimes get awakened in the middle of the night with severe nausea. About a year and a half ago they did an upper endoscopy (the Dr. I'm seeing on Tues.) because of these attacks. I had inflammation in the upper duodendum so they thought I might have celiac. The biopsy was negative and they said it was bad acid reflux. I did also have a colonscopy about three years ago so I don't see any need for him to repeat those tests. I am convinced it's my gall bladder because it only happens when I eat fatty foods! The really bad attack that I had a few weeks ago lasted almost three days and I had eaten alot of junk food. Now, it's just always really sore. So you had the inflammation of the bile duct too - that actually makes me feel better because that seemed to be the zebra to my Dr. It makes sense that it would have been inflamed on the ultrasound because that was done the day after that three day attack so I'm sure things were still flared. My Dr. did do bloodwork but it came back normal so far. I believe that three weeks of pain and losing weight is more than enough! I am looking forward to Tuesday and talking to my GI Dr. (he is actually very nice) and hoping we can get to a surgeon and get this taken care of before the holidays - I want to eat cookies! Thanks for all of the info and support!

Thanks to all - It's amazing to me how many of you have had diseased gall bladders that never showed on any tests. After the hida scan came back normal, my primary Dr. said I don't think it's your gall bladder (despite the obvious symptoms) - I think it's your dysautonomia! What? I hate it when they blame everything on that. He obviously has not learned that gall bladder problems often show up "normal" (although I do have the bile duct inflammation). I am having another mini attack as we speak. I am supposed to see the gastroenterologist on Tues. but he's not a surgeon. I wonder what he is going to say - I guess the concern is that there is something else going on because the common bile duct is inflamed - that worries me. But, the pain only comes when I eat certain things - as long as I am eating rice, baked potatoes, some veggies I am ok. This afternoon I tried to eat some dry cereal (low fat and no cholesterol) and powie - about an hour later here comes the awful pain again. To me, that's classic gall bladder. Oh well, I guess I'll see the Dr. Tues. and if I'm not satisfied, I am calling a surgeon. Enough is enough.

Well, still no answers and still alot of pain. I had the hida scan and it was normal (not a big surprise). They didn't use the CCK - I'm not sure why. There are no stones but I do have an inflamed common bile duct. Now, I have to wait to see a gastro Dr. (I was squeezed in for Tues.) and I guess more tests are coming - probably more invasive. In the meantime, I am in pain every time I eat any fat, nauseous, and I have lost ten pounds in two weeks. Very weak and it's not helping the ANS issues. Of course, my mom-in-law was helpful when talking to her by mentioning pancreatic cancer! So, now I'm scared on top of everything else - I was hoping it would be something easy to diagnose like gall stones but with me, of course not! I guess it's possible to have a diseased gall bladder and inflamed duct without stones? I'm so confused! Maybe there is a teeny stone in the duct that is causing pain but not actually blocking anything. Sorry, I'm venting - onward and upward!!!

I have noticed lately that when my bp is low, the bottom number is getting REALLY low. For example, last night, my bp was 88/48 and I felt lousy. Not to the point of fainting but the top of my head kept tingling and I was very lightheaded and had alot of pressure in my head. The bottom number is also low frequently when the top number isn't so bad. It will drop in the low 50s/high 40s when my top number is like 100 or so. I know that "normal" bp for that bottom number is around 70 so I don't think the 40s can be good Does anyone else experience this? I know my Dr. is always concerned about that top number but I'm interested in info on that bottom number dropping and why it does and when to worry. I think when it is low, it is why I often feel so bad even if the top number is stable. Any thoughts?

The external loop is a bit different from the holter. The holter is monitoring you 24hours a day and there is someone on the other end watching it. With the loops, it is doing a "looped" EKG constantly but will only record when you push the button and then it is reviewed only when you call it in. The internal loop works like the external loop. You will have a little device to place over top of your skin where the monitor is when you feel an event (dizziness, palpitations, fainting, fluttering, etc.). When you push the button, it will record (I think it "loops" back about 3 minutes prior to your recording and also records the time you pushed it). You then will either call the recording in (if you are fortunate to get a newer model) or you will have to go to your EP's office and they will hook you up to a machine and "download" you (I used to joke that I was bionic!). The Dr. will also set the recorder to record automatically if certain criteria occur (for example, if your heartrate goes up past a pre-determined number, or goes below a pre-determined number and the monitor should also record itself if there are rhythm abnormalities). These automatic recordings will show up when you either call in an event or you are downloaded. I know it's hard not to worry about the surgery, but it really was fine. Actually, the monitor gave me peace of mind because if I did feel lousy or had an event, we could look right away at what was going on with my heart and know if it was anything to be concerned about. Any other questions, feel free to ask! Take care. Oh, and you may want to have someone watching your kids for at least the first day or two (especially if they are younger). You will likely be tired and groggy the first day and then pretty sore in the chest the next few days. If you're kids require you picking them up, you will not be allowed to do that for about a week.

He/She will most likely take a VERY thorough history of your symptoms as far back as your childhood. If you haven't had any tests done yet, you will most likely get an EKG in the office (as brianala said, painless and easy). After my initial EP visit, I was scheduled for a 30 day heart monitor (mine doesn't really have too much faith in the 24 hour ones - our hearts don't perform on command!), an echocardiogram (basically an ultrasound of the heart), a stress echo, and a tilt test (which diagnosed my POTS). You may be sent for bloodwork as well. Hope everything goes well for you!

Yes - I often feel like I am leaning and other times I feel like I am actually being pushed forward or sideways. It's not a pleasant feeling...haven't been able to figure it out but it happens very frequently for me.

Hi BellaMia - I HATE those electrodes. I would develop nasty rashes every time I had them. They would get raised and red and really raw, even the hypo-allergenic ones. I have a history of atrial tachycardia, atrial fibrillation, inapproporiate sinus tach and super ventricular tach as well as bradycardia. Of course, POTS gets throw in there for good measure. I was constantly being monitored so my EP cardio decided to put in the internal loop. I really didn't mind it too much, although it would pull and get sore at times. It was nice to have it when I would have an episode. As I'm sure you have learned, episodes don't always happen while on the monitors, although it sounds like yours did. I can relate to what you're saying about the grandkids seeing things you would rather them not. It's that way at my house with my kids too, especially my daughter. She was only 8 when I started having collapses and the paramedics kept coming and it's been really tough on her. But, we just persevere - what else can we do? Anyway, I hope whatever was going on with you is under control....take care.

Hello - are you having an external loop monitor put on for 30 days or are you having an internal loop recorder implanted? I have had both. The external monitors are not a problem at all - you just record your events and call them into the call center. They will take a look and if there is anything urgent, they will call your Dr. Otherwise, your Dr. will go over the results with you at your next visit. The implanted loop recorder procedure wasn't too bad. I recovered pretty quickly. They used a twilight anesthesia so I was conscious but didn't feel anything. My chest muscles were pretty sore for the next week. I just took things very easy. I had the monitor removed in July after two years (battery died). This time they used general anesthesia so I was out like a light (and I preferred this to being awake for the procedure). Again, sore chest muscles but not a bad recovery. Good luck - I hope you get the answers they are looking for....if you have any other questions, just let me know...I've had about ten external loops, probably three or four two-week holters and finally the implanted loop for 2 years. I'm happy to have none at the moment!

Ughghg......caffeine is NOT my friend! I have to drink decaf everything - coffee and tea. I usually have some decaf in the morning and drink water or decaf iced tea throughout the day. I guess it depends on what type of POTS you have or what else is going on with your body. I definitely cannot have caffeine.....

I started having symptoms after the birth of my 2nd child, approx. 12 years ago. I was diagnosed with fibromyalgia a year after her birth and that went into remission a year or so later. I then started having the severe tachy and crazy heartrates/syncope. The first cardio I saw said it was nothing or that I had a pulmonary embolism that resolved itself (and he thinks that's nothing?!!!) and just gave me a bit of beta blocker. This helped for a bit until about 8 years ago when everything broke loose again. Symptoms came on with a vengeance. Primary care suspected something vagal but wasn't sure. I was so fortunate to get to my current EP cardio who was familiar with POTS and immediately ordered a tilt. Diagnosis came right away.....then sent to a neurologist who diagnosed a deed-seeded vestibular issue (which I never quite understood) and also a ENT who said I was also having silent migraines. Never quite came to a consensus about those things. A couple years after the POTS diagnosis, I started to have bouts of atrial fibrillation, atrial tachy, inapproporiate sinus tach and SVT. So that has just added to the joy of being me! Fortunately, I love my cardio and he helps me with all of the above. So, I didn't have nearly the horrible time others did with getting diagnosed. I started researching POTS after my diagnosis and everything made so much sense. I had never heard of it prior to my tilt test. Through the whole 12 years, I experienced severe dizziness, syncope/near syncope and awful tachycardia. Like everyone else, I just tried my best to get through each day while knowing something was very wrong. I am grateful for my Drs. who were as determined as I was to figure it all out.

Thanks firewatcher - I don't think you're old fashioned at all! I much prefer your way - I did even before I got sick. To me the crowds and the party scene and running all over with my kids like a lunatic was very underrated. In fact, one of the positives that came out of my diagnosis was that it forced me to slow down as well as my kids and force us to spend quality time together. We spent alot of time in the car together going from place to place but we were all so overwhelmed and rushed and stressed that we seldom had meaningful discussions. That's not the case now.....and I think it's a good thing. So, bring on the "old fashioned" activities/values - I'll take them anytime!

I guess it was my family that gave me the strength to persevere - that and the fact that I am extremely stubborn. I didn't have a choice. I couldn't just roll over and let the illness take me over. We all knew something was terribly wrong with mom and I knew I needed answers in order to be the best mom and wife I could be (no matter what that meant). I never dealt very well with limitations and I am very hard headed so I just kept pushing. I was very fortunate to have a primary Dr. who was as determined as I was to get to the bottom of what was going on. I saw I believe four different Drs. before I was sent to my current EP cardio who is wonderful. I am blessed to have good insurance so I could keep going until I found the right Dr. I know many don't have that option. I just couldn't settle for the "anxiety" angle or that I was just under too much stress. My kids forced me to get out of bed each day (and still do) and keep trying to find answers. To this day, they are what keep me going. If I didn't have them to get up for each day, I'm not sure that some days I would even bother. Thanks for doing this article....sounds great!

Thanks so much everyone! I am definitely going to use your ideas for future columns (will contact you for permission first of course!) For the Fall newsletter, I have decided to focus on how to make the upcoming holidays easier on us potsy/orthostatic people and ways to have family time without causing symptoms to spiral out of control. Hope you like the tips!

Hello everyone - Can you share how you handle family time? I know that so many of us are unable to go out with our husbands, significant others, children due to our illness. So, what creative ideas have you come up with for family or spouse/significant other time? With the upcoming holiday season, I am also interested in how you handle holidays with your family. Do you travel? How do you handle trick-or-treating with your kids? How do you explain to extended family what your limitations are? I will be writing a new column in the newsletter titled "Family Matters" and am gathering some ideas to assist with the first topic - family time. I have many ideas and info. from other sources but to me you all are the best source of all! Any creative idea is welcome. You may either pm me with the info or post it here for others to benefit. If I use the idea in the column, I will contact you for your permission and name to make sure you get credit. Thanks!

Thanks everyone! I am scheduled for Wed. afternoon for the hida scan....mine is without the CCK so we'll see what happens. Hopefully, they will be able to see what they need without the CCK. In the meantime, I'm just eating bland food and today get to watch everyone else eat crab legs for labor day while I eat a baked potato and some bread!!

I would recommend a stationary recumbant bike. I purchased one about a year ago and LOVE it. I like it much better than a traditional stationary bike because I am actually sitting in a chair with arms and a back. On a regular stationary bike, it was still dangerous if I got dizzy because there was nothing supporting me. Also, the recumbant puts lets strain on my back. I can work my legs and get the blood pumping without any concern for falling off or over. I got mine from QVC.com. Good luck!

I would recommend a stationary recumbant bike. I purchased one about a year ago and LOVE it. I like it much better than a traditional stationary bike because I am actually sitting in a chair with arms and a back. On a regular stationary bike, it was still dangerous if I got dizzy because there was nothing supporting me. Also, the recumbant puts lets strain on my back. I can work my legs and get the blood pumping without any concern for falling off or over. I got mine from QVC.com. Good luck!

I would recommend a stationary recumbant bike. I purchased one about a year ago and LOVE it. I like it much better than a traditional stationary bike because I am actually sitting in a chair with arms and a back. On a regular stationary bike, it was still dangerous if I got dizzy because there was nothing supporting me. Also, the recumbant puts lets strain on my back. I can work my legs and get the blood pumping without any concern for falling off or over. I got mine from QVC.com. Good luck!

Thanks everyone! I feel better about the test...I guess I had read one too many horror stories about how sick people get during the scan. I have been dealing with these episodes for several years now but none like I had over the weekend. It lasted three straight days and the pain was excruciating. I am unable to take painkillers due to allergies so I relied on Tylenol and a heating pad which didn't come close to cutting it - needless to say, I will be very careful what I eat until we get to the bottom of it. In the past, ultrasounds have been negative but this one showed something going on with the common bile duct which indicates a diseased gallbladder or a small stone lodged too small to see on ultrasound. It may be that because I had the ultrasound so close to my attack, it showed up this time. So, I will schedule the test and see what happens. I don't want surgery again but I certainly can't continue like this! Thanks again.

After many episodes of pain and a REALLY bad episode over the weekend that lasted for three days, I had an ultrasound of my gall bladder. Although there were no stones, the bile duct was inflamed and appeared messed up. They want to do a hida-scan to get a better look and a better idea of what is going on. Has anyone with POTS/dys done this? I am concerned because I will have to lie still for about two hours and whenever I lie in one position for any length of time, my bp drops considerably. I am also concerned about how the radioactive dye might affect me not to mention how the scan itself causing gall bladder symptoms will affect me. Any insight from anyone here who has had one? Although I know I will feel better getting the surgery because I've been dealing with this for a few years, I have had eight surgeries in the last three years and I just don't want another! Thanks!